Constant pains in tummy - what should I do?

Posted , 6 users are following.

Hiya

So diagnosed in Aug 14 with left sided uc. On asacol & laxido to help stop constipation. I thougt I had this under control but have been getting horrendous and constant cramps and pains in my tummy but also had irregular periods, bloating, discomfort, unable to bend properly..... Doc sent me for an ultrasound which I had today as thought I had ovarian cysts but sonographer said its all clear and instantly asked if I had bowel problems. She said that she wasn't an expert on uc but maybe it was linked. I'm not bleeding or have any mucus so docs say I'm not in a flare. What do I do now? I can't live like this forever. Should I get my meds changed? Glad that my 'lady bits' all look ok but gutted to think it may be my colitis that's causing these pains. I'm not sleeping properly or managing to carry out normal duties, I'm living on strong pain killers that don't do anything - please any suggestions? I'm calling my ibd nurse tomorrow to see if she'll arrange an app for me to see my consultant. Sorry for the moan but desperate fellow sufferers :-( xxx

0 likes, 10 replies

10 Replies

  • Posted

    Hi I'm sad you are in such pain. My son was diagnose in Oct 13 and he struggled with symptom relief that was consistent as his UC reacted well to steroids and anti inflammatories but then he got worse. He ended up having surgery. One thing I would say is that from our experience always go to the best, so St Marks hosp London or John Radcliffe hosp Oxford.

     Good luck

    • Posted

      Hi Sheila91262

      I hope you dont mind me asking, but what surgery did your son have and how did he find the recovery etc.  I know this is a personal question so won't be offended if you do not wish to share this information xx

       

    • Posted

      It wasnt good I'm afraid. My son was diagnosed in Oct 13, got much better on meds and then started reducing doseage as per GP instructions and got much worse very quickly. He was told at emergency appointment with consultant at local general hospital that if he wasnt much better in 2 weeks he needed to be in hosp on drips. He didnt make 2 weeks and so just before christmas was on a ward but v ill. They tried low residue diet, intravenous meds etc, finally trying Infliximab but before it could work he had emergency ileostomy ( removal of his large bowel) as his bowel had perforated. He has spent the last year getting fit again and he has had surgery to form a j pouch and will have last surgery to join him up again and remove his stoma.

      The consultants say people with UC who get so severly ill, approx a third, will need this operation sooner or later. Since this happened we have done lots of research and we think he probably didnt get the right meds after his symptoms got much worse and its a shame we didnt get to see a consultant who really had lots of experience of this.

      So as I said before St Marks or John Radcliffe are the best places to go for the most upto date experienced help. Given time over again we would have done that. Also be aware that IBD sufferers are more prone to DVT.

      I wish you the best of luck.

    • Posted

      Hi Sheila

      Thank you for sharing the information with me.  I am so sorry to hear of the stress and pain your son (and of course your family) have gone through over the past year.

      I am an UC sufferer but also suffered a pulmonary embolism last November, which is currently being investigated to see if it was from my disease.

      I reached the stage where I became drug dependant but in March had the worst flare up ever, which required a hospital admission, and today saw my consultant who has advised me that we have reached surgery stage.  (I have become immune to the drugs so no longer working for me).  I am currently taking 150 azathioprine, having Inflimixmab IV and have just finished a course of steroids, which have only reduced the inflammation slightly.  The disease is still very active so I am trying the adalimumab injection this week, for a month, and if things don;t settle, a chat with the coloproctolgy department is on the cards.  My consultant thinks the I will not respond to the injections but wants me to try it just in case I can prove him wrong.  So....my thoughts are now living with a stoma bag.  I originally suffered with proctitis so not sure if my rectum is too diseased for a j pouch yet.  Thanks again for sharing your experience; much appreciated.

      I hope your son makes a good recovery.

      Unfortunately both hospitals you mention are South,  I live in the North but my Consultant Professor Rutter is a godsend and extremely knowledgable and caring.

       

    • Posted

      Hi I am so sorry for your suffering, it really is a cruel disease especially as it appears out of nowhere.

      If you do elect for surgery the positioning of the stoma is important as it can interfere with your clothes. A stoma nurse will measure you for the position but do talk about clothing and lifestyles as my son was unable to wear jeans as the stoma was right under waistline.

      The positive side is being able to eat whatever you like and be drug and pain free!! My son had to get up once during the night to empty his bag but thats because as an athlete he does eat alot to keep his weight up. The mucous fistula could be a pain as it can be quite close to the stoma and it is active and needs dressing. My son had an Asacol pessary a day to help to dry up the emissions. He did sit on the loo each day and pass mucous discharge. Ok compared to UC.

      We travelled to Oxford for the jpouch surgery as they do it all the time and have a great success rate and do all sorts of pouch surgery . Its worth it for the short time the surgery took and he can go back to local hosp for maintenance.

      He did develope a dvt from his emergency ileostomy, 2 weeks after he came home as the hosp didnt consider him at risk so didnt send him home with blood thinners, they have subsequently changed their policy.

      IBD patients are more prone to DVT and PE s.

      Good luck with your treatment whatever it maybe.

       

    • Posted

      Thanks sheila91262 for your kind words and information relating to stomas.  I am due to have my first set of injections (Adalimumab) tomorrow and my IBD nurse has arranged for me to meet up with a doctor within the hospital who has had this operation.  This will give me the opportunity to ask all the questions I need and get answers from someone who has experienced it.

      I have another flexi on Monday as they would like to take biopsies.  Due to my PE I have to come on warfarin tomorrow and have 4 days of heparin injections.  This is so that I can have the biopsies done.

      Your son seems to be handling quite well from what I can gather. My head is spinning a little.  I have to thank my lucky stars that I have time to deal with the prospect of surgery and it is not classed as an emergency like your son had to, which must have been very hard for him to take in.

      Some poeple say that after having the first op and having the temporary stoma, that a couple of months down the line they choose to not go ahead with the pouch as find they have coped really well and do not want to have the next two operations and recovery.  Again for me, it will require time off work.  You mention that keyhole has a quicker recovery which is useful to know.

      You also mentioned that you went to Oxford.  How far away was that from your home town.  Am I right in saying that you can choose which hospital you would like to have your operation in?  We have a really good hospital here but I am a bit of a worrier and after the op, I would like to have a private room which they do not have at my hospital!  I was on the ward recently and it wasn't my best experience.......

      Thanks again for your advice expecially about where to place the stoma and I hope your son makes a well deserved recovery x

       

  • Posted

    I had to stop asacol because it caused severe cramping and pain for me also. I am on Mesavant XL now and those problems are gone. Hence, could it be that or Laxido causing your problems? If I take Laxido for a few days I get very bloated. Regarding constipation never take codeine, ever in my view and diet is the biggest issue...nature knows best....

    Best of luck.

  • Posted

    Poor you, I know what you are going through.  Definitely speak to your IBD nurse as I am sure she will be able to help.  I suffer from UC and proximal constipation and Laxido does tend to leave you bloated after taking it for a few days.  Perhaps a short of course of steroids may help and give you some relief as when I take these, I get a bit of life back in me...although they do carry side effects.  They might suggest an alternative drug that may start to help as you really shouldn't be in this much pain.  Have they offered you a flexible sigmoidoscopy or colonoscopy to check your condition x

     

  • Posted

    Hi mummajo

    Do you think your UC is maybe getting worse? I've read some people are ok no blood etc for years but I don't think that means your uC is getting better? As far as I knew it got worse unless controlled?

    I don't think it's right you live your life on strong painkillers there must be another solution??

    I'm sorry for what your going through!

    I was diagnosed with uc on January after a flexible sig however they now want to look at my full bowel.

    I have tried mezaline suppositories whi h didn't work and made me constipated.. So I drank this tea to flush me out!! Then Saloflak foam whi h if I'm no way I didn't use at the weekend because I needed a nights sleep. I explained all this to my consultant and she said she didn't blame me! Have u tried mezaline or saloflak foam??

    I'm now on mezavant 1200 two in the mor img and they don't seem to be working either but they do for a lot of people!!

    I'm always so tired and pass blood every single day and mucous most days. My stomach is so bloated and I'm not experiencing pain.

    While I'm here I wanted to say thankyou because I have spoke to you before and I'm sure you have me "tough love" I listened and have attended all my appointments bs even have hopefullyu first and last colonoscopy next week

    Take care love millie x

  • Posted

    Wow, thank you all for your fantastic advice. I always feel much better hearing from you all as sometimes feel a bit lonely having this disease. I'm going to call the IBD nurses in a bit and maybe they'll get me an app with my consultant. I think maybe a couple of you could be right re the laxido so I'm going to come off them and see if the pains subside & if not then maybe it's the Asacol or maybe it's just not being controlled properly. Everyone I see just says that it's being controlled as the blood and mucus has stopped but people have different opinions on this. I'd like another colonoscopy to see what's going on but only had one last Aug so not sure if these pains would justify another one as I know they're expensive? I just worry as there's colon cancer in my family. Just want to feel better now as I've only had a couple of months since being diagnosed that I've felt human. Not easy having 2 kids under 4 when living with these pains but I'm a 'do-er' & find it best to keep going as when I stop the pains are so bad. Thank u all so much for your help, it really has been helpful as always. I'll keep u posted with any developments! xxx

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